Don't judge my path if u have not walked my journey, before you judge my life, my past or my character ...walk in my shoes, walk the path I have travelled, live my sorrow, my doubts, my fear, my pain and my laughter ...everyone has their own story ... this is my journey as a mother to a bubbly boy, Adam Danial, and a miracle boy a.k.a. my lil fighter named Ammar Danish ...

Tuesday, August 19, 2008

This is a true story which i copied from Persatuan Sindrom Down Malaysia (PSDM) book. Everytime aku rasa down or bersedih mengenangkan keadaan ammar, aku bukak balik buku ni so that i realize that ada orang lain yg senasib ngan aku malah ujian mereka lebih hebat.

The story goes like this ...

I went through nine months of good pregnancy and had no problems at all but I went through a bad labour for 13 hours. As I was pushed to the labour room, I could still hear my other children saying, "Mummy, bring us home a beautiful baby boy".

It was like a bombshell when the doctor annouced that I had a Down Syndrome baby. I knew nothing about DS nor anything related to it. I went down on my knee to ask for help not knowing that there's no cure for Down Syndrom. When I got to know that it can't be cured I went through a very bad depression.

When my baby was only few days old, the doctors pronounced him as deaf, dumb and blind and that he will not survive through the week. I sought psychiatrist help for a year for my depression and emotional turmoil and kept asking my self "why me?".

Then I came across a book titled "why me?". The book was about a parent with two special children. It sent a message to me saying that God had chosen me to be this baby's mother. After reading that, I was determined to pull myself out of depression and do the best for my son Johan Rahmat.

(as i am typing this story, I couldnt stop myself from crying, tears came down like pouring rain)

I looked around for centers for physically and mentally impaired children. I attended many local and international conferences and invested in tapes and books which I share with the centers.

Johan was born with a hole in the heart and now has leukemia. Johan also suffers from another syndrome which is called the "Ectropian" syndrome because he was born with short eyelids and needs plasters on his eyes whenever he sleeps. I have to keep him by my side whenever I take him out.

The doctors said that he will go blind in his teens. I was told by the doctors to love Johan day by day and not to wait for tomorrow. Johan sleeps with one hand ties to me so that I'll be aware if he has a heart attack.

I want parents to realise that it is not the end of the world if their child has Down Syndrome. What is important is to have a support system which will let you know that you are not alone.

Johan is a fighter and he is also my best friend. He is a very caring and lovable child. He knows when I'm sad or happy. He can sense my feelings.

Bringing up a special child like Johan involves hardship and requires patience and love. Since having Johan, I have become very involved in the parents' support group and my home is always open to all mothers of child with Down Syndrome who needs emotional support and counselling.

Johan will also play his part by helping parents understand Down Syndrome child is and to give them hope for the future. I hope to go on doing this and I feel it is part of my life.

To all mums and dads, please welcome this child into your family and also give him or her lots of love. Remember, there is always light at the end of the tunnel waiting for you. God has sent you this wonderful baby for you to care for and there is always a reason to it. By having this child you will always be contented with life, be reminded to do good deeds and be close to God.

I believe we are very special people, and that is why God sent upon us this special child.

by Johari and Laila

Ammar in his 1st week

I really understand how Pn. Laila felt, I really do. For those who didnt know, Ammar is a down syndrome baby and was born with heart & gut problems. He has been diagnosed with lots of things since birth, but mostly concerning his lungs.

3 months old with life support in ICU

Lucky thing is his heart condition called (PDA) is not in failure but still need to be monitor closely with regular follow up & check up.

5 months old, still in ICU

Immediately after birth, Ammar was on life support for 30 days, in his first week, the doctor told us that he has 50/50 chance of life as at that time his liver swollen and his blood flows the opposite way (suppose A-B, instead B-A) plus the body has started rejecting the food & medication.

7 months old, in HDU again due to recurrent pneumonia

8 months old, in ICU after 'fundoplication' surgery

But Allah is great, Ammar beats all the obstacles and doctors prediction many times, he is a fighter too same as Johan ....

9 months, happy & free at home .. makin bulat!!!

If I were to write about Ammar's journey today then it will be the longest entry I have ever written. Maybe when I have time I'll write a book about Ammar's journey & my life as a mother to a wonderful and special baby.... just maybe.

Friday, August 15, 2008

To make a woman happy..... A man only needs to be:1. A friend2. A companion3. A lover4. A brother5. A father6. A master7. A chef8. An electrician9. A carpenter10. A plumber11. A mechanic12. A decorator13. A stylist14 A psychologist15. A pest exterminator16. A psychiatrist17. A healer18. A good listener19. An organizer20. A good father21. Very clean22. Sympathetic23. Athletic24. Warm25. Attentive26. Gallant27. Intelligent28. Funny29. Creative30. Tender31. Strong32. Understanding33. Tolerant34. Prudent35. Ambitious36. Capable37. Courageous38. Determined39. True40. Dependable41. Passionate

WITHOUT FORGETTING TO:

42. Give her compliments regularly43. Love shopping44. be honest45. be very rich46. Not stress her out 447. Not look at other girls

AND AT THE SAME TIME, YOU MUST ALSO:

48. Give her lots of attention, but expect little yourself49. Give her lots of time, especially time for herself50. Give her lots of space, never worrying about where she goes

Thursday, August 14, 2008

it has been months since i last logged into my blog. the truth is, i didnt hv much time 4 myself since ammar discharged frm the hospital, i dont sleep well, only 3-4 hrs a day as ammar is still on 3 hourly feeding at home, i’m just sooo bz doing things and chores, it's like never ending story when it comes 2 house chores.

it's really a big challenge 2 be a working mother esp when you hv a 9 mths old baby n a 6 yrs old boy at home. i also hv 2 teenage girls n 12 yrs old boy too but these days u cant really rely on them, kids nowadays are so forgetful, they tend 2 forget what you told them 2 do ... the result??? my whole house is like a ship wrecked!

funny thing is, when i start nagging or yelling (not really yelling lah, just a bit of high pitch) automatically they remembered everything n knows what they should do! it's really different when i was about their age (14-15 yrs), i did my chores before my mum starts nagging at me.

now i realized that it's not easy 2 hv n 2 raise a teenager... i hv 2 currently living wth me! i dont really have much problem wth the younger ones but the eldest gave me headaches ... bear wth me, she gave n cause a lot of problems 2 us. i tried so hard 2 understand her, i really hv tried my best but it didnt work, i puzzled at times, i really wonder why is she still doing all the things that we (my husband n i) forbid her from doing. i'm tired of nagging her .. so i quit nagging n now on silent treatment (i only talk 2 her when the needs arise) n hope it'll work.

i was so dissapointed n sad when one day her best friend came 2 me n told me that this 'ungrateful girl' told her teachers and friends that she hated me since the day i married to his father.

yes, i am married to a divorcee wth 3 children. i met my darling hubby 8 years ago, at that time i worked as a secretary 2 his friend. never thought in my life that i would marry a divorcee, but that is what love do, love is something u cant predict ... and so, after a year of courting, we got engaged ... a year later officially became husband & wife.

anyway ... back 2 the story, the younger sister told me the same stories too. at the same time this 'ungrateful girl' creates her own version on how her father ignores them n send them 2 the shelter (this was when my hubby and his ex were officially divorced), and so she had 2 look after her younger sister n brother!!! my husband hurts so much when he heard about the news … who wouldn’t right??

she hated me so much, fine wth me, but why did she creates stories about her father, her flesh and blood, which is why i call her 'ungrateful girl'. she is sooo magnetic wth problematic friends ... ran away frm home, pregnant, school drop out etc. i really dont know what i should do 2 change her 2 be better person n appreciates life.

the latest, we caught her red handed when she skipped from school last week, we thought this 'ponteng sekolah syndrome' is new but actually she has been doing this since june ... not everyday but still ... she is not supposed to skip school!!! aarrgghh!! aku bengang giler!! don’t know what i should do wth this girl … sigh..

but whatever lah, kadang2 malas nak piker byk2, got lots of things in mind … i hv to set my priorities and other important things, for example, 4 other kids to be taken care of esp ammar.

of course all this is a very …really tiring process for me, physically and mentally, i guess this is what it takes to raise a children tak kisah brp ramai anak kita ada, the challenge is still there.

Blogger We Care - Ammar

Ammar

MUHAMMAD AMMAR DANISH, my special boy with special needs was born on November 2, 2007 with an extra chromosome, he was diagnosed with Trisomy 21 (Down Syndrome) when he was still in my womb at 35 weeks of pregnancy. Currently, he has to be fed through Gastrostomy tube. Other underlying problems are Severe GORD, Recurrent Pneumonia, Hyperactive Airway Disease and Patent Ductus Arteriosus (PDA). He is now due for PDA occlusion @ IJN.

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Down Syndrome Creed

My face may be different,but my feelings the same.I laugh and I cryand take pride in my gains.I was sent here among youto teach and to loveas God in the heavenslooks down from above.To Him I'm no different,His love knows no bounds;It's those here among you,in cities and townsthat judge me by standardsthat man has imparted,but this family I've choosenwill help me get started.For I'm one of the children,so special so few,that came here to learnthe same lessons as you.That love is acceptance,it must come from the heart;we all have the same purpose,though not the same start.The Lord gave me lifeto live and embrace,and I'll do it as you do,but at my own pace.-Unknown